I'm swimming 20kms in May for Ehlers-Danlos Syndrome Awareness and Research

May is Ehlers-Danlos Syndrome awareness month. I will be swimming 20kms this May, to raise money for the Ehlers-Danlos Syndrome Society.

20 years is how long we've waited for the new diagnostic criteria, and 20 years is often how long some people wait to get answers. Although, there is more research and attention being paid to EDS than ever, we are still a long way off where we need to be. We need much more research being done to help the people suffering from the many serious complications, and serious pain. People are waiting way too long to get answers, and many people are getting very sick, and even dying, before finding answers. Even after being diagnosed, there are so many unknowns with EDS. They know that there are certain things that arise in EDS, but for a lot, they don't have a good understanding of why. Without knowing the why, proper preventative care, and treatments, are impossible to find. The EDS society, is finally spreading much needed awareness, and trying to raise funds for much needed research.

There are at least 13 types of EDS, some very rare with only a few families every being found to have them. Others, are much more common, and affect hundreds of thousands of people all over the world. It's impossible to cover all symptoms and problems people with EDS experience here, but some of the main symptoms and issues faced are:

Musculoskeletal

• Unstable joints that are prone to sprain, dislocation, subluxation, and hyperextension
• Thoracic outlet syndrome
• Early onset of advanced osteoarthritis
• Chronic degenerative joint disease
• Swan neck deformity of the fingers
• Boutonniere deformity of the fingers
• Tearing of tendons or muscles
• Deformities of the spine, such as scoliosis (curvature of the spine), kyphosis (a thoracic hump), tethered spinal cord syndrome, and occipitoatlantoaxial hypermobility
• Myalgia (muscle pain) and arthralgia (joint pain), which may be severe
• Trendelenburg's sign
• Osgood–Schlatter disease

Skin

• Fragile skin that tears easily/poor wound healing
• Atrophic "cigarette paper" scars
• Easy bruising
• Redundant skin folds
• Molluscoid pseudotumors, especially on pressure points
• Subcutaneous spheroids
• Livedo reticularis
• Piezogenic papules
  
  

Cardiovascular

• Arterial rupture
• Valvular heart disease, such as mitral valve prolapse, which creates an increased risk for infective endocarditis during surgery. This may progress to a life-threatening degree.
• Dilation and/or rupture (aneurysm) of ascending aorta
• Postural orthostatic tachycardia syndrome
• Raynaud's phenomenon
• Varicose veins
• Heart murmur
• Heart conduction abnormalities

Other manifestations

• Hiatial hernia
• Gastroesophageal reflux
• Gastrointestinal dysmotility (gastroparesis, chronic intestinal pseudo obstruction, dysphagia, colonic inertia). This can progress to life-limiting severities.
• Dysautonomia (POTS, Orthostatic hypotension, neurocardiogenic syncope, can also affect other thigns controlled by the ANS such as pupils, sweating etc)
• Anal prolapse
• Collapsed lung (spontaneous pneumothorax)
• Nerve compression disorders (carpal tunnel syndrome, acroparesthesia, neuropathy, including Small fiber neuropathy)
• Insensitivity to local anesthetics.
• Arnold–Chiari malformation (brain disorder)
• Platelet aggregation failure (platelets do not clump together properly)
• Pregnancy complications: increased pain, mild to moderate peripartum bleeding, cervical insufficiency, uterine tearing or premature rupture of membranes.
• Sleep apnea
• Cranial vertebral instability: caused by trauma(s) to the head and neck areas such as concussion and whiplash. Ligaments in neck are unable to heal properly, therefore, the neck structure does not have the ability to support the skull, which can then sink into the brain stem blocking the normal flow of cerebral spinal fluid, leading to issues related to the autonomic nervous system failing to work properly.

Because it is often undiagnosed or misdiagnosed in childhood, some instances of Ehlers–Danlos syndrome have been mischaracterized as child abuse.

The pain associated with this condition is a serious complication.

Join me in supporting real change to the lives of people with EDS.

Just a small donation will go a long way to helping me meet my goal for The Ehlers-Danlos Society